Life after survival from sudden cardiac arrest (SCA) can be challenging for both survivors and their loved ones, according to speakers at the Citizen CPR Foundation (CCPRF) Virtual Summit last week. Their session, “Putting Science into Action: Thriving in Survivorship,” was introduced by survivor Jim Niskanen, Chair of the CCPRF Survivorship Committee. Speakers included Tom P. Aufderheide, MD, MS, Medical College of Wisconsin; Katie N. Dainty, PhD, University of Toronto; and Mary M. Newman, MS, Sudden Cardiac Arrest Foundation (SCAF).
Dr. Aufderheide focused on the importance of recognizing the new 6th link in the Chain of Survival—recovery—as described in the 2020 American Heart Association position statement on SCA Survivorship authored by Kelly N. Sawyer, MD, MS, and colleagues. He emphasized that the statement is not a solution, but rather highlights an important unmet need and provides a roadmap for progress. “We are now transitioning from a focus on survival to a focus on survivorship,” he said. He encouraged survivors, family members and caregivers to participate in research to better inform healthcare providers on ways to improve post-resuscitation quality of life.
Dr. Dainty stated that what is known about survivorship is relatively new, since survival from SCA is a relatively new phenomenon. She summarized what has been learned about survivorship to date, including research by the European Resuscitation Council. She also discussed the importance of building patient-reported outcome measures (PROMs)—which are commonly used in other fields—to provide insights on the effectiveness of care from the patient’s perspective.
“Hospitals slap you on the back and say, ‘Good job. Go out and live!’,” she said. “We need patient-reported outcome measures for cardiac arrest survivors. It needs to go beyond asking clinicians how they think the patient feels.” She reported that developing a validated PROM for cardiac arrest, led by Dr. Kirstie Haywood, Warwick University, is underway in nine collaborating countries.
Ms. Newman described SCAF’s “SCA Network,” a proprietary, permission-based online community that provides peer support and a safe place for survivors, family members and advocates to share stories, plus opportunities for members to participate in research. SCAF collaborates with hospitals and universities, providing access to survivors and family members interested in participating in post-resuscitation quality of life research. She provided highlights of research with collaborating institutions, including Beaumont Health System, University of Colorado, University of Michigan/NIH, and NYU Langone Health.
SCA Network Research
Beaumont Health System
Research with Beaumont Health System, led by Dr. Sawyer, took a preliminary step in assessing how patients experience life after survival, and was a precursor to the AHA statement on the 6th link in the Chain of Survival. The qualitative pilot study conducted in 2013 among 159 survivors and 39 family/friends in the SCA Network found that the biggest challenges for survivors are anxiety, memory loss, re-establishing routines, depression, driving, work/school, and financial concerns.
Global themes identified among survivors included the significance of others, the idea that “we are in this together,” the perception that feelings are overwhelming, and the need to find a new normal. Global themes identified among family and friends included lack of information at discharge, lack of mental health resources, and fear it could happen again. The most common advice provided at hospital discharge was to “Take it easy.”
This research identified the need to a develop a system for discharge counseling that includes follow up re-evaluation, reiteration of instructions, expectations, resources for survivors and loved ones, and options for peer support.
University of Colorado
Research conducted with the University of Colorado, led by Alex Prescuitti, MS, PhD candidate, and Sarah Perman, MD, MSCE, seeks to understand how systemic factors and individual psychological factors impact the quality of life among survivors and informal caregivers.
The 2019 mixed methods study used the SCA Network as a sample. The quantitative component was conducted among 169 survivors (an average of 5 years post event) and 53 caregivers (an average of 3.5 years post event). In addition, 16 survivors participated in qualitative interviews.
Key findings include: Survivors who have threatening illness perceptions, report poor provider-patient communication, or report not having been ready for hospital discharge are more likely to have worse quality of life.
Key takeaways to date include:
- Psychological symptoms are common and problematic among survivors and loved ones.
- Post-traumatic stress, anxiety, and depression are more strongly associated with quality of life than are memory problems and physical dependence in survivors.
- There is room for improvement in how we prepare survivors for life after discharge.
- Findings will inform ways to prevent the development of psychological symptoms in both survivors and caregivers.
Analysis of the qualitative research component is underway.
University of Michigan/NIH/Siren
SCAF also worked with representatives of SIREN (Strategies to Innovate Emergency Care Clinical Trials Network), funded by the National Institutes of Health, to recruit members of the SCA Network to participate in a workshop on family experiences related to the first 48 hours after cardiac arrest. Working with Renee Kasperek-Wynn, RN, BSN, University of Michigan, the SIREN Clinical Coordinating Center, and Sarah Perman, MD, MSCE, University of Colorado, Workshop Co-Chair, SCAF recruited family members of survivors and family members of those who did not survive. The 5-hour virtual workshop included a mix of family members, providers and advocates, and addressed communication needs, emotional needs, and physical needs of family members. Findings from the workshop are in development.
NYU Langone Health
SCAF is also working with Sam Parnia, MD, PhD, and his team at New York University Langone Health on several research projects including:
- Novel methods to augment the delivery of oxygen to the brain
- Consciousness, awareness and cognitive experiences during cardiac arrest
- Survivorship and psychological well-being after cardiac arrest.
Understanding psychosocial perceptions of life in the aftermath of cardiac arrest is essential to providing resources that support recovery and quality of life. “Recognition of the gap in addressing psychosocial needs following SCA is a game-changer for survivors and their loved ones,” said Newman. “Continuing to build insights from survivors and family members is essential if we are to deliver fully on ‘the 6th Link.’” For survivors and family members, participating in research can be healing and they want to help, she said. “Survivors and family members can be the best advocates for our cause.”
Together, We Can Save More Lives
The session culminated with a short video, Together, We Can Save More Lives, created by SCAF in collaboration with Buddy CPR and StrataVerve, which is available on SCAF's home page.
For information on joining the SCA Network click here.